No magic yet

[Smokygirl]

So disappointed. First night on Pred and no magic solution for me yet. I still woke up in pain at 2:30am and then again at 5:00 am . Also the new ache in my left wrist and hand which Is what pushed me into starting the Pred , is there again. Here’s hoping tonight will be better 😞

[Theziggy]

Pred can take a few days to kick in - but when it does you will notice the difference

[Smokygirl in reply to Theziggy]

Thanks so very much for the reassurance. You are all so knowledgeable.

Xxx

[DorsetLady PMRGCAuk volunteer]

It doesn’t give everybody a miracle cure immediately, but hopefully after a few days it will start.

But you have to remember it’s not actually a magic pill - you have to do your bit as well - it’s not working on the PMR itself, just the inflammation caused by it - so just take things easy. Be patient, but if you don’t notice a difference within a week, you should speak to doctor.

In the meanwhile have a read of this -

healthunlocked.com/pmrgcauk...

[Smokygirl in reply to DorsetLady]

Thank you so very much DL. I have just read your treatise on PMR and pred. It is wonderful. You are wonderful. It is extremely informative.

I shall try to be patient for the moment, which is very hard because I am a quick quick do it now sort of person.

I also don’t feel myself since I started the Pred. My head feels so fuzzy.

I am a keen club bridge player, heaven knows what I’ll play like tomorrow evening!

Thank you again xxx

[DorsetLady PMRGCAuk volunteer in reply to Smokygirl]

I think most of us are “quick quick do it now “ people - that’s probably one reason why we get these illnesses

For other lighthearted reasons have a look at these -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Smokygirl in reply to DorsetLady]

Had a good giggle at your Viking and star sign theory DL ! Fabulous!

However I’m a dark haired, brown eyed Geordie and a Capricorn to boot so even tho I am in the right area to have had have Viking ancestors——- I think not!!! 🤣🤣🤣

[DorsetLady PMRGCAuk volunteer in reply to Smokygirl]

Ahh well, never mind!

[SheffieldJane]

Give it a chance to get into your system - the time it takes varies. If you don’t feel at least 70% better in 2 weeks perhaps your doctor will up your start dose to 20 mgs.

[Smokygirl in reply to SheffieldJane]

Ohhhh I hope not! I wanted him to start me on 12.5 mg. having read about a trial—— but he wouldn’t! He was obviously right! Xxx

🤣

[SheffieldJane in reply to Smokygirl]

That is a pretty low start dose. I was assuming that you were on 15 mgs. There is no value in taking a low dose of Pred if it doesn’t deal with all of the inflammation. You get the side effects and uneven relief. This of course, is a matter for you and your doctor. Ouch though!

[Smokygirl in reply to SheffieldJane]

I am on 15 mags SJ! Fortunately my GP didn’t listen to me!!😘😘

[Smokygirl in reply to Smokygirl]

Sorry mgs

[SheffieldJane in reply to Smokygirl]

Sorry, I misunderstood your post. The doctor was right. I hope that every day it gets better. I was skippity hoppity after 48 hours.

[Smokygirl in reply to SheffieldJane]

Oh that’s so good to hear! Can’t wait!

Thank you so so much for your sharing your knowledge ,experience and reassurance.

It is invaluable. Thank you again xxx

[HeronNS in reply to Smokygirl]

It was the third morning when I got up and was puttering around when I suddenly realized I had not had to plan how to get out of bed! But I had felt somewhat better beginning about six hours after first dose. Was a gradual process.

[Smokygirl in reply to HeronNS]

Thankyou so so much for your reassurance HeronNS. I am so grateful for all the reassurances and info that you and all the others provide. You are all simply wonderful! Xxx

[PMRpro Ambassador in reply to Smokygirl]

If you had read the whole article you would have seen that the conclusion was that 12.5mg will achieve an acceptable result in a month! So, either you wait it out or if you want a quicker result then you need more pred to start.

[Smokygirl in reply to PMRpro]

Yes of course I read the article about the trial but I am trying to take in so much info all at once from different articles that I am more than a bit muddled. Please forgive me.

Anyway —- I’m on 15 mg so it’s a moot point!

So my guru, help me please with this as my brain is buzzing 🙃

Is it 3/4 weeks on 15 mg and then a steep drop to 12.5 or do I do it slower? If slower how? There seems to be more than one article on decreasing and they are slightly different. I am a bit lost and you are my encyclopaedia of MRI and Pred!

After two days on 15 mg pred there has been for me no difference in pain and stiffness at all and I have a constant mild headache and feel really heady & fuzzy and not myself at all. However everyone is so kind and reassuring which I am truly grateful for.

Thank you again for all your patience with us newbies. Xxxxx

[PMRpro Ambassador in reply to Smokygirl]

It isn't 3/4 weeks on the starting dose - it is at least that and more if you need it to get all symptoms under control and stable and, if it applies, to get the blood markers down to normal levels and stable. Some experts recommend 6 weeks at that starting dose. Then you can start reducing.

I think you should stay at 15mg for a week and if there is no improvement discuss 20mg with your GP. In the long run that may mean less pred. But everyone is different and some people do take much longer to get a result - especially at the lower doses.

Are you resting or have you tried to carry on as normal?

[Smokygirl in reply to PMRpro]

Thanks again for your knowledgeable advice. My GP is on holiday for another week but when he comes back I shall try and get him to refer me to the team at the QE in Gateshead, as you recommended. I guess that will take several weeks so I am in his ( and your!) hands for how to proceed at the moment.

I still walk my mile in the early morning as I am terrified of losing muscle and bone quality , I love it and will continue to do that as long as I am able. I then go food shopping and then flake out completely at about 3:00 pm and have to go to bed and sleep for two hours which is very strange for me.

I am out most nights at the bridge clubs but that is mostly sitting —- which makes me stiff. My bad pain and inability to move is at night at about 2:00 and then again at 4/5 am.

Weeding my small garden will have to wait! xxxx

[PMRpro Ambassador in reply to Smokygirl]

You seem to be doing pretty well at adapting to living with PMR!

The night pain at 2am is probably the pred running out if this is PMR - I would suggest splitting the dose, it may work this early and at 15mg, take maybe 10mg in the morning and 5mg in the evening. it's certainly worth trying once or twice, if it doesn't help you can go back. That should deal with both the 2am and 5am pain.

However, pain at that time of night is also more likely if it is a polymyalgic presentation of some forms of inflammatory arthritis so that is also worth bearing in mind. Was that when you had pain before going to the GP?

[Smokygirl in reply to PMRpro]

Yes. Those night times. The pain worst was in both shoulders and upper arms . So bad at times that I couldn’t turn over in bed without shouting out. It was also very mildly around my hips and groin but that has disappeared ( before pred). In the mornings very very stiff had to roll out of bed , stiff for approx two hours. Still cant cut toenails or put bra on easily. My CPR was rising daily although only reaching 15 before my GP went on hols. He gave me the Pred before he went.

The reason I wa given the Pred was after a night of great stress, when I spent five hours until 2:am in the RVI with our son ( here for the weekend) who thought he was having another heart attack —- thank G-d he wasn’t———( he had a triple by pass last year and has been type 1 diabetic since 6 years old)

When I woke up in the morning I was on my back and more or less paralysed and my hubby had to unwind my arms and get me out of bed. But that was a week ago and it has not been as bad since .However on Friday I decided to give the Pred a trial go after a painful night. Perhaps it is PMR perhaps it is not—— I really don’t know but there is absolutely no joint pain anywhere else.

That’s my story PRMpro sorry it’s so long xxxx

[Smokygirl in reply to Smokygirl]

Sorry CRP

[PMRpro Ambassador in reply to Smokygirl]

Sounds pretty typical for PMR - and stress makes it worse. And sitting on hospital chairs is not good for myofascial pain syndrome which can be mixed in with PMR, it is for me. That is what makes a PMR flare excruciating for me.

Don't mind long history/post when it is relevant - far better to know the facts than make a guess!

[Smokygirl in reply to PMRpro]

Thank so much once again for your brilliant and knowledgeable advice and patience. I shall try splitting the dose tomorrow. Xxxx

[Highlandtiger]

I think everyone is different. I started on a Tuesday at 20mg but didn’t feel the full magic until the Saturday. Give it a week at least and if nothing has happened by then check with your doctor. But don’t despair. Stressing about it won’t help (easy to say I know).

[Smokygirl in reply to Highlandtiger]

Thank you so much for your reassurance. I really appreciate it.

Roll on the next few days! xxx

[Smokygirl in reply to Highlandtiger]

Sadly can’t help stressing about it—— I’m a worrier! 🤣🤣🤣 My hubby says I drive him mad!😜😜😜

[Highlandtiger in reply to Smokygirl]

Oh I get it! I am exactly the same.

On the 4th day of Pred I suddenly realised I’d got up without struggling for the first time in months but completely unconsciously, just like the old me.

At first I was in the 'I'll beat this' camp and like lots of people my first thoughts were to get off the steroids as quickly as possible.

I’ve had to change my mindset massively, and am now much more relaxed about taking them for as long as I need to.

They’re what lets me get up in the morning, go to work and have a life.

And while it’s not quite the life I had it’s not that bad either and it’s certainly much better than the life I would be having without them.

As the experts on here taught me, acceptance is the way forward.

Good luck and I hope they kick in soon for you. 🤞🏼

[Smokygirl in reply to Highlandtiger]

Thank you! You are so lovely! Xxx

[Yellowbluebell]

My pmr was only slightly better after a couple of doses. It took about 4 days before I realised the pain had eased more or less completely. For some its an instant relief but not everyone gets that. Patience and accepting are ill is the way.

[Smokygirl in reply to Yellowbluebell]

Thank you so much YBL! It is wonderful having you all comforting me and calming me down. I am a worrier and probably that is causing my mild headache and fuzzy head! Oh it’s all a bugger!!!!!! Xxxxx

[Hidden]

Same as above.

[Smokygirl in reply to Hidden]

Thanks so much. I so so appreciate the knowledge and info that you are all so generous with. It has really helped to know that it took a few days for some of you lovely people to improve with Pred.

Thank you again xxx

[Hidden]

It also took 4-5 days for me, but to go from 7-8 pain level to 2-3 in that length of time was magic indeed. You’ll get there. 👍.

[Smokygirl in reply to Hidden]

Oh thank you so so much for your reassurance. I’m such a worrier—- put off taking Pred for over two months in the first place and now I’m worried it won’t work! My hubby says I drive him mad! 🤣🤣🤣

[Hidden in reply to Smokygirl]

There will be a lot of inflammation for the pred to manage after a couple of months. Hopefully it will chomp it's way through asap 😉

[Hidden in reply to Smokygirl]

You will get great help on this forum from the very patient moderators/ teachers really, and fellow travelers on here. I know they have to repeat often for us newbies, but they never seem to mind. Oh I understand worry. Guess it’s because pmr was/ is a great unknown at first. I think I drove a lot of my family a bit mad at first. 😩 . My best to you. 🌷

[Smokygirl in reply to Hidden]

You are all wonderful, helpful, reassuring and unfailingly patient too! I can’t thank you enough xxxxx

[nickm001]

It took at least a week for me before "magic" happened. It depends on your weight, how long have you had symptoms (accumulated inflammation that has to be cleared) and also current activities ( you may be a bit too active, which is going to prolong the process). Higher dose would work faster, but then you have to taper from that point. Look at the bright side, you are already at 15mg, and it takes some people couple of months to get down to 15mg level.

[Smokygirl in reply to nickm001]

Thank you so much for your reassurance and advice which is so very helpful. I’m probably doing too much— it’s very difficult to stop when you have had a routine for many years! I am so appreciative of everyone’s input, you are all so knowledgeable.

Thank you again xxx

[PMRpro Ambassador in reply to Smokygirl]

Rest should be prescribed - then people might have less of a guilt complex moderating their activity!

[dillydally1]

hi, it took 3 to 4 days for me to get some relief from the pain. this is my second time with pmr, I remember the first time I got relief after a day. so give it time your relief will come, take care x

[Smokygirl in reply to dillydally1]

Thanks so much DD, Hope you are right!

Wow—- you’ve had it twice—- that’s so not fair 😪😪

Hugs xxxx